Ok further to yesterday’s post some more very random thoughts on elective medical procedures, women with disabilities, capacity to consent, advocacy, mothers and parents in general. It’s long and you need to click on the link down below to read it all! (First time I’ve used the jump…wonder will it make you read it all!)

I don’t believe that Katie Thorpe should undergo a hysterectomy. The reasons given by her mother for the procedure are that she will not have children or marry and that periods will bring discomfort and indignity and that it will prevent pregnancy and abuse.

Preethi Manuel writes in today’s Guardian about her experience as the mother of a disabled young woman and questions the intentions of Alison Thorpe. In her response she talks about the disabling aspects of society rather than the disability of the individual – this is the social model, it’s not perfect (and neither is the wikipedia on it!) but it informs my life as a disabled woman and my practice in working with people with disabilities.

I could go on and on about bodily integrity etc in this but just take it as given – quality of life for me does not mean performing elective surgery or other procedures to make a carer’s life easier or degender someone, or infantilise them or or or or….

Why is the answer to abuse or an unwanted pregnancy a hysterectomy?

Will a hysterectomy remove the threat of abuse to Katie? No – in the same way Ashley – the pillow angel (and I’m using the description for location purposes only) is still going to be open to abuse in care settings and in her own home even though her parents organised for her womb to be removed and her breast buds and for drugs to be administered. Prevention of abuse/pregnancy was one of the main reasons they used for the procedure

I’ve also had a feminist thought on this subject which might be a bit new in the debate – in fact if anyone locates feminist analysis on this issue please leave a comment!

Why a woman should be mutilated to protect her from the actions of men? Is patriarchy assisting Alison in her desire to infantilise her child and keep her at home longer? Why is there no discussion on preventing abuse and only on preventing the effects of abuse??? Why are we not having discussion about care and support for families of people with disabilities and where people with disabilities live when they cannot live at home or do not want to live at home or should not have to live at ‘home’. Actually what is home?

Capacity – the non issue in the ‘room’

(I’m resisting a tangent here on capacity because this is not about capacity at all but I do have queries about the fact that because Katie cannot speak, read or write that she is considered to be like a baby (interview on RTE yesterday) – her mother or other professionals are unable to estimate her capacity, intelligence etc. etc. but they probably know when she is happy or not and expresses other emotions and feelings. And there are a myriad of ways in which work on communication could be facilitated. The notion of the uneducable is back with us in this story – all too easy for those who resist inclusion and a bit of effort and ingenuity. Elsewhere in today’s Guardian the story of Preethi’s daughter Zahra is told).

Parental rights

We might consider the fact that Alison Thorpe could no longer be considered responsible for Katie’s care after her 18th birthday and indeed she will no longer be able to arrange for hysterectomies or other procedures – as she will not be able to consent then and Katie will have the right to representation and advocacy when she is 18 so Alison is organising it all now whilst she can. And some would say she would like to keep Katie a child – the language used (RTE Drivetime interview yesterday), the clothing in the photos, so much more is about the way in which she wants Katie to be seen and continue to be seen – the appearance of periods brings the realisation that Katie is no longer a child.

Why does Alison think that those who oppose her should walk in her shoes (or indeed have not walked in her shoes?) I don’t believe that parents or indeed any guardian should have the right to make these decisions on the basis of their parental position or caring obligations – Alison has talked about the 24 hour care provided for Katie for the past 15 years. Parents are often not the best advocates for their children and indeed have to remember that they don’t have the right to parent a child for the rest of it’s life, able bodied or disabled. Other medical models such as drugs to prevent periods have been rejected for medical reasons but there has been no examination of the way in which society could be enabled to facilitate Katie’s needs and that of her mother whilst not mutilating her body. No all we hear about is how tough life is and how disabled Katie is.

Responses to parents medicalising puberty etc.

I am enthused about the responses of UK disability organisations on this issue – Andy Rickell is leading the way as a disabled CEO of one of the largest disability organisations in the UK. Scope was known as the Spastic Society and brings with it huge amounts of baggage and Andy taking the job brought huge amount of comment. Many people with disabilities have viewed Scope and other organisations with huge amounts of cynicism as regulators of our lives. However people with disabilities now lead disability organisations – the political model of disability in action? I don’t think we’ve made that move in Ireland yet and indeed I have been pondering the Irish response to such an issue but that is for another post.

Now UK mainstream disabled organisations have found a voice when it comes to the regulation of our sexuality and all other areas of our lives. For years wombs have been removed and drugs have been administered, muscles have been loosened and tightened and no consent has been sought or granted – it was just done on the consent of the parents and the agreement of the medics who delighted in the chance to get the knives out. It happened in Ireland and still happens. We have no rights based legislation for people with disabilities.

The link is being made to technology and medical procedures and the removal of rights to services – ie. if this is done then Katie will remain at home and not require supports or need to live elsewhere, then what other procedures could be done to make things easier, change life patterns, end life options. We’re not dead yet.